I'm still here!!

Apologies for not writing for a while. Been concentrating on getting better! Went to Clatterbridge yesterday (that’s the oncology hospital where I’ll be having my treatment) to have my mould fitted. Basically they cover the top half of you in plaster of paris and use the mould to create a perspex shape of your head and neck that they will put over you during treatment to keep your head in the exact same position every time they point the x rays at you. Will be back next week for a planning meeting to go through the details of all the treatment so I’ll know more then I hope.
Had my hair cut quite short today! Not too short, but had a fair bit off. I read that having it short helps as the chemo can make it more brittle and so it’s less likely to break off if it’s short. And if it does all fall out it will be less dramatic if it’s shorter! I’m not too worried about it, I know I’ll cry my eyes out if it does all fall out, but I’ll get used to it and it will grow back!
I’m more worried about the radiotherapy, it can make you mouth very sore and blistered so it will be difficult to eat and drink and to speak, but it will only last a couple of months and I have to keep reminding myself of that. I’m doing so well now and I just have to remember that I’ll get back to this in time, in fact I’ll be even better!
Had a lovely day today with friends coming to visit and fish and chips for tea! Also, the two stitches left in the front of my lip have come out so i’m very happy about that (it’s the little things these days!)
Will try and keep this updated more, but there’s not too much going on at the moment!! Thanks for your continued support!!

On to the next step

Hello again. I’m doing well, feeling almost back to normal. Went to the hospital yesterday and had the staples taken out of my leg, there were 50 of them! It is one massive scar, but I love it, ha. News from the hospital was good, they got all of the tumour in the operation which is the most important part. The cancer had spread to two of the lymph nodes they removed, but was still contained within them (I’m sure there are people out there who understand this far better than e but I’ve been told that’s a good sign as it won’t have spread anywhere else. Met with the radiographer (described by infamously tackless surgeon as ‘being rather brash’ so you can imagine what he was like!) he has recommended that I have post-operative chemoradiation, which is six weeks of radiotherapy with three sessions of chemo mixed in. It was hard to hear this from the doctors and I got quite upset as they listed off all the possible side effects like they have to! But I am willing and ready to do whatever it takes to make sure this thing never comes back! The chemo won’t be too harsh as it’s not as often as it can be and you can’t predict how each person will react so I’ll have to wait and see. The radiotherapy will also be hard as it will be targeted on my mouth so my speech and eating is likely to get worse again. But I just keep telling myself that it will only be 6 weeks and then things will turn around again. If I can get through such a major operation so well I’m sure I can face this too. And again, age is on my side and being young often makes you more resilient to these things. It was because I’m so young and can cope with it and need it gone for a long time that he wants me to have the chemo on top!
Going to the oncology hospital next week to have my mask fitted (you have to wear a perspex max to protect the rest of your head from the x-rays) and to see their dentist to make sure my teeth look ok. Then back the following week for a planning meeting where from what I gather they just practice what they’re going to do to you! Then I’ll be back in liverpool full time for the treatment the following week I think.
So, in the mean time I’m going to enjoy the next few weeks of feeling a bit better before the treatment starts. Kev will be at the b&b over the bank holiday weekend so we will make the most of spending time together!

Thanks so much to everyone for all the kind messages and cards. It is so appreciated xxxxxxxxxxxxxxxxxxxxxxxxxx

Getting better

Hello again! Feeling much better today, not so feverish! Antibiotics have started to kick in, still leaking a bit from my wound (sexy!) but hopefully that will stop soon. It’s like someone had popped my head with a pin, all this stuffs come out and the swelling in my neck has gone right down! My neck looks almost normal, just waiting for my left cheek to catch up!

Going back to Liverpool tomorrow to see my surgeon for a check up and to get the stitches (and by this i mean the big metal staples!!) taken out of my leg. Think it will be a week tomorrow when I find out the pathology results from my op and we decide what treatment to take next. I’m trying not to think about it too much and just concentrate on getting better from the op. I’m a bit worried, but whatever needs to be done I’ll do it and face it head on, there’s nothing I can’t do to get better from all this. You have to fight, because there really isn’t another choice.

Missing my friends very much, can’t wait to catch up with every again. I’m going to have a huge party when I’m better to celebrate!

Not much else to report, apart from trips to the doctors I’ve not been doing much, just watching a lot of come dine with me!!

xxxxx

A bit of a blip!

Not feeling so great today, woke up feeling very ill in the night with a very stiff neck. Went to the hospital where they gave me some antibiotics for an infection so hopefully it’s just a minor setback and I’ll feel better soon.

My eating is improving everyday which is encouraging, and I’m managing to eat more. Not that I recommend it but this whole thing is a good way to loose a stone and a half in a month!! got some little drinks to have everyday that are full of calories and protein and every vitamin and mineral ever which is good to help my recovery! My mums also been making fruit smoothies! Eating is quite fun because I’m not eating a lot the things I do eat can be really full of naughty things like cheese and cream and lots of calories!! yum! My speech really is so much better than I was expecting. Kev rang me earlier and could completely understand everything I said which I think is amazing just 10 days after having 2/3 of my tongue removed and replaced with my leg!

I’m not really in much pain, it’s just uncomfortable and tight, but gets better every day. I don’t think I’ll be confident enough to go out in public until the swelling goes down a bit. I don’t mind people seeing me look like this, it’s not as if it’s my fault. But i don’t like the thought of not being able to explain to people what’s happened and why I look like this. When the swelling in my cheek goes down more I will venture outside, ha.

I'm Home!!!!

Hello bloggers! So, I’m home!! They decided yesterday that I’m doing well enough that there isn’t much more they can do for my in the hospital so I came out today. It’s so nice to be back at home, getting some home made mushed up food from my mum. It did feel a bit overwhelming leaving the hospital wen you’re so used to being there, but having been her a couple of hours and it’s already so nice.

Had all my stitches taken out of my face today, they scars are really neat so they will look quite nice I think. Saw the scar on my leg today for the first time, its long and still got lots of metal staples in it, but again it will fade in time and I’ll become very accustomed to it I’m sure. Still feel very tired and stiff, but I’m getting better every day and seeing progress all the time so it is encouraging.

There was a man in the hospital yesterday that the doctors got me to meet who is 32 and just been diagnosed with the same thing as me and about to go through the same procedure. I think it was nice for him to see someone who has been through it and made it out the other side in good time and doing well. I know I would have loved the same thing in that situation so I gave him my email and I hope I can help him and his wife with any questions they might have!

Swapped addresses with Sybil so we’re sure to keep in touch!!

Everyone at the hospital has been really impressed with my recovery, and I do honestly believe it’s to do with my attitude. I have been very positive and determined to beat this, because I have to be. There isn’t really any other choice, I can’t spend time letting it get me down and being negative because it doesn’t do you any good and doesn’t help to get you better. It’s just an obstacle in life that has to be gotten over and has already made me so much stronger. Of course I’ve been scared and upset at times, but I just remind myself that it will (fingers crossed) be over soon and will one day just be a story to tell the grand kids! (Ewwww, did you know nan has a leg for a tongue?!?)

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Hopsital food never tasted so good!

Hello to all again! Having another good day. Everyone is very pleased with my progress. Onto eating some food today, she tried me on a yogurt this morning and I managed to have mashed potato and pureed corn beef for tea so I’m making progress. It is so nice to eat again just to taste some food; which I can!! My taste seems pretty unaffected which I’m really pleased with. My speech is getting better, the therapists are quite confident that once the swelling has gone down I should sound quite normal again. Lucy has brought me some of Joshua’s food in to snack on for now, but I will beat him to being onto proper solids, the race is on!!

It’s funny, I definitely underestimated how huge the operation was. I haven’t seen anyone else have anything as extensive as me done, but because as I’m on average 40 years younger than everyone else I’m healing so much faster. There are things I thought would be worse like me speech and things I didn’t even really consider, like the 7 inch scar on my thigh!!

Still look very swollen on my left side which might take another 2-3 weeks to go down (and I might “always look a bit wonky” according to my surgeon. The man is a genius but not the most tactful, among his other quotes to me have been “we’ll take the skin flap from your thigh because that’s the biggest part of you” and “don’t worry about loosing some weight because you have got weight to loose” it’s a good job for him that he’s saving my life!!) and obviously going to have scars, but I couldn’t care less. Maybe if it was all caused by an accident or something it would seem more unfair, but the scars will just be a reminder of what I’ve been through and how strong I can be. Besides without the scars I’d still have the cancer so they are definitely better than that!! Right now I want the swelling to go because that’s what is keeping me up at night, I just can’t get comfortable!

Hopefully I’m due to come out at the beginning of next week when all my stitches are out and I’m feeling a bit more sturdy. I know I’m starting to feel better now because I’m asking more questions and think about things like actually having a proper shower!

The girls on the ward have been keeping my spirits up and I have to keep an eye on that Sybil when Kev comes to visit, I can see that twinkle in her eye!

I love water!!!

Hi again! Doing better still today. The mornings are always hard when i first get up, but things start to get a bit better when the painkillers kick in and various people have come to check on me and tell me I’m doing well. The surgical team are really pleased with the way everything looks so far. I saw the speech therapists for the first time today, they were very pleased with how I’m speaking so far and said there is no reason they can see yet that my speech won’t be really good in the end. The worst part about this is not eating. That would be a great comfort right now. They feed me through a drip but it makes me feel very sick, started on sips of water today so I can swallow a bit so the therapists want to see me going onto baby food in the next couple of days so i’ve been practicing my swallowing (so far i’ve been a very dribbley mess!!) but when i get that sorted i can start eating to i really want to do that!! Been seeing the physio too, he’s very impressed but I don’t think he’s used to looking after anyone so young!!

It is hard being on a ward of old people who mainly have cancer, but there is one great woman called Sybil, we have a pact on that in a years time we’ll both be fine and fitting fight, so if she can do it at pushing 80 I think I can too!!

I never knew how much I loved water until today, being able to shower and have a drink have been the highlights of my day!!!

much better!

Hi everyone. Doing much better today after an awful night an morning!! got my tracheotomy taken out today so can ever speak a bit now so the nurses won’t let me write things down that I want to ask for anymore. Still dribbling a lot which is lovely, but swallowing getting better. Feel pretty stiff but seen the physio today so got lots of exercises to do!! got all the wires but my feeding pipe out now so am pretty mobile which is nice. Doing so much better than the rest of the ladies here!! but then I’m not going to let it beat me, i’m going to work and hard and get back to normal soon!!

Missing everyone lots, probably up for visitors tomorrow. Hopefully will have showered by then cos right now I am disgusting!! the nurse braided my hair earlier which cheered me up a lot!!

Lots of love to everyone xxxxxxxxxxxxxx

I'm Back!!

Ok, so I’m back to the blog so I can’t be doing too badly for myself. The last few days have been by far the hardest of my life. So much pain and distress, but I feel like I’ve picked up a bit now. Hopefully getting my tracheotomy out tomorrow which I can’t wait for, it’s absolutely awful!!

Operation was a total success, got the whole tumour out which turned out to not be quite as big as they first thought and according to those lucky enough to see my face right now they have done a very good job patching me up!!

The nurses on my ward are lovely, Helen is very nice to me and Eileen is a bit more of a fn of the tough love but I do need that sometimes too. I think I bring down the average age of patients around here to about 75 so you can imagine what its like, can’t wait to be recuperating at home. Sister is coming to see me this afternoon then probably be ready for visitors from tues or wed. It’s absolutely exhausting just having people here!!

Had a bit of a panic yesterday when I asked when the weird feeling plastic bandage would come off my face only to be told that that was actually my own skin!! Still not planning at actually looking in a mirror anytime soon!

Will write more later, for now this has totally used up my energy reserves!! Still remain pretty positive, things can only get better from here! Have a big afternoon ahead of me involving sitting up in a chair so i need to rest for that!!

Thanks so much for everyone’s support, i have some truly amazing friends and family!! Especially appreciate all the time and love from my parents and from Kev!! love to you all xxxxxxxxxxxxxxxxxxxxxxx

Getting closer......

So, I’m packed and ready to go. My suitcase is mainly full of an excessive amount of pyjamas, but hopefully I’ve got everything I need. Getting a bit nervous now. My lovely friends took me out for dinner tonight and bought me lots of amazing presents for my hospital stay, I feel very lucky!

Going in tomorrow at 10:30 am, not sure what I’ll be doing for the whole day as they’re not actually operating until Thursday. But thought I would write now in case I don’t get the chance to tomorrow! I know as the time gets nearer I’ll start to feel more anxious, but hopefully I’ve got enough stuff to take my mind off things. Besides, no matter how nervous I get I want this thing removed now more than anything. I want my body back to normal so I can get on with being me and living my life!!

The weirdest thing will not being able to talk for a while. I love talking with my friends and boyfriend, I’ll miss it a lot. My friend’s have bought me a white board to write on and I’ve tried to learn a little bit of sign language! (thanks to Lindsey I now know the sign language for ‘a boat coming into the harbour’?!?!) I’m pretty determined so hopefully it won’t be too long before I can be understood again!!

I’ll keep this short and sweet tonight because I’m pretty tired, but hopefully I won’t be out of action for too long and I’ll be back in touch soon!!

Preparation Preparation Preparation!

So, I’ve been spending the last few days trying to get ready for going into hospital on Wednesday night. I don’t think I really appreciated how much there was to do! Been trying to sort out everything I’ll need for my stay; clothes, pyjamas, books, computer, dvds, toiletries. And there’s the things I have to sort out like work and money and making sure I’ve spoken to and seen as many of my friends as possible.I am worrying a bit that I won’t have time to fit it all in, but I’ll manage to do enough I’m sure.

I’ve been trying not to think about things too much. I’m just focusing on the operation for now, it’s important I use my energy to recover from the operation and get my strength back to fight this as hard as I can. I’m not too worried about the operation, my surgeon seems really good and I feel like I’m in the best possible hands. I know the NHS gets its fair share of bad press, but I’m very confident I’ll get the best care possible. Besides, I have so much support from all my amazing friends and family who will help me get through this I have no doubt!!

I’m not going to spend any time moping about and feeling sorry for myself, because that’s such a waste of time. You only get one life so no matter what it throws at you you need to keep positive and get on with things or you’ll definitely regret it one day!!

Naturally I am scared, I’d be lying if I said I wasn’t, but I’m determined not to let it get the better of me. There are some amazing sources of support out there, especially the macmillan cancer support website, hearing other peoples stories of conquering similar situations is a huge encouragement and people have been so kind to me.

Thank you so much for everyone’s support and please keep reading and i’ll try to keep it interesting!! xxxx